Tuesday, August 28, 2012

Paisley's Diagnosis

I've written about what happened and now I will tell you why our baby died at 17 weeks in utero. As I was writing my first of three posts on our birthing story, my dr called with the results of the study on the placenta. {We were so blessed to be able to have the autopsy done. I have a friend who never had one and many other women are never even given that opportunity. It helped me heal tremendously and I am so thankful.} Perfect timing!

Although I didn't recognize the number so I didn't answer the call! It was so amazing of the dr, himself, to call me and to also give us his personal cell number. He didn't pawn off the job to a nurse... he did the dirty work. He really is my favorite! We played phone tag and finally got to speak with him a day or two later.

His news was pretty shocking, but also a relief.

Paisley had Trisomy 18.

Trisomy 18:

"Trisomy 18, also known as Edwards syndrome, is a condition which is caused by
a chromosomal defect. It occurs in about 1 out of every 3000 live births. The
numbers increase significantly when early pregnancy losses are factored in that
occur in the 2nd and 3rd trimesters of pregnancy.

Unlike Down syndrome, which also is caused by a chromosomal defect, the
developmental issues caused by Trisomy 18 are associated with medical
complications that are more potentially life-threatening in the early months and
years of life. 50% of babies who are carried to term will be stillborn, with
baby boys having higher stillbirth rate than baby girls.

At birth, intensive care admissions in Neonatal units are most common for
infants with Trisomy 18. Again, baby boys will experience higher mortality rates
in this neonatal period than baby girls, although those with higher birth
weights do better across all categories.

Some children will be able to be discharged from the hospital with home
nursing support for their families. And although less than 10 percent survive to
their first birthdays, some children with Trisomy 18 can enjoy many years of
life with their families, reaching milestones and being involved with their
community. A small number of adults (usually girls) with Trisomy 18 have and
are living into their twenties and thirties, although with significant
developmental delays that do not allow them to live independantly without
assisted caregiving."
-----http://www.trisomy18.org/site/PageServer?pagename=whatisT18_whatis

Trisomy 18 is what Rick Santorum's youngest daughter has.

It was a relief because we knew that it was a freak accident... obviously ordained by God... but not something genetic that would likely ever happen again. The chromosomes just didn't do their jobs right. We know she had some serious issues and yet she kicked so strong and tried to hold on as long as she could, mostly for us I'm sure. That is one part that really breaks my heart.... how hard she fought to live.

If she had lived to be born with Trisomy 18, I cannot imagine having to lose her at that point. I cannot imagine having to tell Kassidy that she will most likely die after that.

I kind of knew once we got the first news that she had something wrong, only I thought we would be able to overcome it. We would love her and educate ourselves and we would be ok. I didn't know we wouldn't get that chance.

And maybe awful as it sounds, the Trisomy 18 news was the best news we could have received. If our daughter was going to die from something I wanted it to be serious. I wanted the chances of survival to look like the stats above. Why? I guess because it meant that there was really nothing we could do. She would have struggled soo much and been in soo much pain if she were alive that I could be ok that she wasn't. Does that make sense?